In the Sanctuary of Outcasts (6 page)

The prison library occupied two rooms in a building in the far back corner of the colony. A prisoner in a khaki uniform sat at a desk flipping through index cards. I asked if he could help me find some books on leprosy.

“What size are they?” he asked.

I shrugged, baffled.

“Then you’re in trouble,” he said, pointing to the shelves. “The library is organized by book size.”

Small paperback books occupied one set of shelves. Larger paperbacks covered most of two other walls. Hardbacks lined the windowsill.

“You’ve got to be kidding,” I said.

He went back to organizing his cards. “Warden likes things orderly.”

I looked around the room. The other inmates seemed perfectly content with a library that ignored author, subject matter, the English alphabet, and the Dewey decimal system. I moved to the second room, the prison law library, where three manual typewriters occupied a table next to a set of
The Federal Code
and a few shelves of reference books. A small man with wavy red hair was typing diligently. He was focused and fast. He looked up, and I asked if he could help me find some books.

Frank, as he introduced himself, told me that a warden in Texarkana started the movement to organize books by size, and it caught on in other prisons. Frank and a couple of other guys came in when no one was working the desk and, clandestinely, organized the books
alphabetically by author, albeit within the parameters of size.

“It’s problematic for title and subject matter,” he said, “but if you know the author’s name, you can usually find the book.” When I told him I was interested in books on leprosy, he cringed. “Disgusting,” he said, shaking his head again. Then he led me to two books written by residents of Carville, as well as two reference books on the subject. Frank gathered his papers and left. One of the other inmates in the law library asked me if I knew what Frank did on the outside.

Frank, he said, was Jimmy Hoffa’s lawyer.

I was intrigued. Hoffa’s lawyer would make a perfect interview subject. He would add spice to the exposé, especially if I could convince him to divulge something about Jimmy Hoffa that no one else knew. I sat at a round table and had just begun to read when I recognized Link’s laugh from the hallway. Link had a new hobby—following me around, asking questions and making fun of my answers.

“Where Clark Kent at?” he yelled. “I got something for him.” Link came in, followed by a couple of his buddies who never seemed to speak. “You made magazines on the outside, right?” he asked. Link laughed and looked at his friends. I told him I had been a magazine editor and publisher. Then he tossed a pornographic magazine onto the table, open to a particularly graphic spread of a man and woman performing a sex act. Link pointed to the publication and asked, “You make
them
kind of magazines!?”

“Of course not,” I said. Most of the other inmates in the library were laughing now, too. This was beginning to feel familiar. I took a closer look at the magazine. The pale white woman with jet-black hair had recently had stitches removed from breast enhancement surgery. The scars were pink and swollen and obvious. She also had a vicious rash on her derriere. The man had grease under his fingernails, and the bottoms of his feet were filthy. His mouth was wide open, as if in ecstasy. A handful of teeth were missing.

I pointed out these shortcomings to Link.

“You is lookin’ at the wrong parts!” he said. This time, even the guy working at the library information table laughed. “Man,” Link said, “you is the borin’est person I ever met in my life!”

I conceded that I probably seemed boring to him.

“What’d you and your old lady do for fun on Saturday night?”

“I don’t think it would interest you,” I said.

“Come on, man. We ain’t got nothin’ but time. What you did on Saturday nights?”

“Well…sometimes we’d get a babysitter and go out for dinner. Maybe catch a show. Sometimes we’d go to parties.”

“They have crack at them parties?”

“No. These were social events. Wine. Beer. Maybe mixed drinks.”

“You not only the borin’est person in the world, you is the whitest man I ever met. You was the motherfucker they was talking about when they invented the word
honky.
You white to the core.”

I gathered my books and went over to the desk to check them out. The clerk at the table handed me a form to fill out. Link watched over my shoulder, then grabbed the form from the clerk.

“Goddamn!” he said. “Even the motherfucker’s name is White!”

Carville’s two miles of covered corridors were built because it was believed the sun aggravated symptoms of leprosy.

After work each day, I walked the perimeter of the prison side. Walking, even in circles, made the time pass. As I made my way around the corridors, I passed by patients and inmates. Best I could tell, about one-third of the inmates were white, one-third black, and one-third Hispanic. The number of healthy inmates (we were called
work cadre
) and medical inmates (called
broke dicks
by the healthy inmates) was about even. Work cadre inmates wore green uniforms. Medical inmates wore khaki. Over one hundred medical inmates were in wheelchairs. Combined with the leprosy patients, more than two hundred wheelchairs moved around the colony on a regular basis. The patients, except for Ella, owned motorized wheelchairs. Inmates had the basic kind, pushed by humans.

My private walks were often cut short by Link. He had yet to get a job assignment, so he spent his days wandering the colony. “This place is a motherfuckin’ country club!” he yelled. “I ain’t never leaving this place!” If Link saw me, no matter how far apart we were, he would scream as loudly as he could to get my attention. “Clark Kent! You borin’ motherfucker!” Some of the older prisoners demanded that the guards assign him a job because he was disturbing their peaceful mornings.

Link had spent time in other prisons, so I imagine Carville did feel like a country club. Six television rooms carried basic cable, as well as HBO. The recreation department had a pool table, a Ping-Pong table, an arts and crafts room, a music room, and a television dedicated to Nintendo. Outside there was a horseshoe pit, a shuffleboard court, a sand volleyball court, a walking track, four handball
courts, a full-sized basketball court, stationary bicycles, and a fully equipped weight room.

Link started making himself at home in my room, much to Doc’s chagrin. Link’s nonstop talking distracted him from his reading. If I happened to miss Link’s visit, Doc would say, “Your friend honored us with his presence again.”

Confounded about why I spent time with him, Doc asked, “You find these people entertaining?”

Link was entertaining, but that wasn’t the only reason I spent time with him. Link told everyone—inmates, guards, even the leprosy patients—that I was out of place. He reminded them I was an idiot criminal who forgot to keep any money. He imitated the way I greeted people, how I apologized when I bumped into someone, how nervous I acted when someone around me violated a rule. In his own way, he was saying exactly what I wanted them all to know. Link told them I was different. He made certain everyone knew I didn’t belong here. I didn’t have to say a word.

And even though Link was making fun of me when he called me Clark Kent, I enjoyed being likened to a superhero.

When I was five,
Underdog
was my favorite cartoon. In my parents’ bathroom in front of the large mirror, I would tie a towel around my neck and flex my muscles like the superhero.

I loved to watch Shoeshine Boy run into a phone booth, transform into Underdog, and save Sweet Polly Purebred from the evil villain. On the rare occasion when Underdog was close to defeat, in need of extraordinary powers, he would open the secret compartment of his ring and recite a rhyme: “The secret compartment of my ring I fill, with an Underdog Super Energy Pill.” When he swallowed the red pill, Underdog became powerful enough to move planets.

On a Saturday morning, I searched through my mother’s medicine drawer and found what I was looking for—a secret energy pill. I pushed the tiny pill out of the flat, plastic container, put it in my pocket, and walked down the block to my friend Mary Eliza’s house. Her mother greeted me at the back door. “That’s a fine cape, Neil,” she said, “I’ll get Mary Eliza.”

Her mother poured us each a glass of apple juice. I turned up my glass and gulped it all down without taking a breath. I let out a sigh and put the glass down on the table, like I had just won a drinking contest.

In the backyard, I put my hand next to Mary Eliza’s ear and whispered that I was going to fly. Mary Eliza had the highest tree house in the neighborhood. I tightened the knot in my cape and took off up the ladder. I climbed up to the tree house and then pulled myself up onto the roof.

I stood at the edge of the shingles and looked down. The tree house was high, far above the basketball goal. Too far to fall. I needed to fly. In my pocket, I found the pill and bit into it. It was bitter and dry. I swallowed all that I could and moved my toes over the edge of the roof. I bent my knees and let my arms relax. I didn’t count. I had a cape, a secret energy pill, and the full belief I could do anything I put my mind to.

I swung my arms out and dove off the tree house roof.

In the doctor’s office, my mother told the nurse about the accident. Then she whispered, “And he took one of my birth control pills.”

The nurse gave me instructions for a urine sample and handed me a plastic container. In the men’s room, I filled the cup. I wished it had been bigger. I could have filled it three times.

“My!” the nurse said, carefully taking possession of the overflowing container.

“I got more if you need it,” I bragged.

Back in the waiting room I told my mother I could have filled a much bigger container. She kissed the top of my head and said, “You were put here to do great things. Don’t ever forget that.”

Jimmy Harris

My plan to write an exposé about the convicts and the leprosy patients fit perfectly with my mother’s early vision for me. I had an opportunity to turn this incarceration into a great piece of journalism. And the next thing I needed to do was get more of Ella’s story. I had seen her in the hallways and a few times in the patient cafeteria, but each time a guard was close by. I would have to catch her alone when we both had plenty of time to talk.

In the meantime, I had met another leprosy patient, Jimmy Harris, who talked nonstop. He had been sent to Carville in 1938. He was writing his own book about life in quarantine and was happy to talk about it to anyone who would listen. He had already picked a title,
King of the Microbes
. Jimmy had a head of thick, white hair and a slight curvature of the spine. Except for a claw hand, he looked perfectly normal for someone eighty-two years old.

Jimmy discovered his own leprosy on a summer evening in 1937. His father was hosting a barbecue. Later that night, as Jimmy undressed and removed the short pants he had worn that day, he noticed a spot on his leg. A clean spot. Although the rest of his leg was covered in fine Texas dirt, none adhered to the oval on his thigh. Jimmy knew the signs of leprosy because his brother, Elmer, had been stricken with the disease four years earlier.

“You lose your ability to perspire,” Jimmy told me with great authority. “I knew what I had, but I went to see a doctor anyway. Took my 1931 Chevy Coupe over to Beaumont. That sucker would fly.” Then he went on to talk about horsepower and cylinders and other
mechanical stuff. He seemed more interested in automobiles than leprosy.

I made notes on Jimmy’s stories, and I recorded conversations I overheard in the cafeteria between the other leprosy patients. They called themselves “secret people.” I felt like a voyeur listening to them talk about their confinement, misdiagnoses, lost families, and the heartbreak of love affairs. What I didn’t hear in the cafeteria, I discovered in the books from the library.

In the 1850s, Carville was called Island, Louisiana. The land was owned by Robert Camp. Indian Camp plantation, as it was known then, was a successful sugar plantation, but it was abandoned when Camp lost his fortune after the Civil War. The plantation sat in disrepair, unoccupied for thirty years, before the State of Louisiana leased the land in 1894. The 360-acre plot, along with a decaying manor house and slave quarters, was then designated as the Louisiana Leper Home. After that, all lepers in Louisiana were sent to the remote colony. The geography was perfect for outcasts. The plantation was virtually impossible to reach by land: a washed-out road with no outlet, leading to a tiny drop of land that looked like gravity had pulled it into the river’s path. It was known primarily to boat captains who navigated the sharp 180-degree turn in the Mississippi River just south of Baton Rouge.

In the early days, doctors and nurses were reluctant to come to the home. There was no running water, little sanitation, and no budget for improvements. The first residents shared the buildings with snakes and bats.

A compassionate physician from Tulane who had studied leprosy traveled to the East Coast to recruit an order of nuns to provide care for the leprosy patients. In 1896, the first of the Sisters of Charity arrived at the colony.

A series of bizarre events that began in 1914 altered the course of the colony’s history and led to its establishment as the national leprosarium. John Early, a veteran of the Spanish-American War, had been diagnosed with leprosy in 1908. A native of North Carolina, Early had been quarantined in a series of temporary posts. North
Carolina sent him to Washington, D.C., where he was imprisoned in a tent on the Potomac River. Officials in Washington transferred him to a colony in Massachusetts, but authorities there refused to accept him. He spent years moving among boxcars, ramshackle houses, and jails. No state or territory would permanently accept him within its province. In late 1914, after six years of provisional quarantines, Early checked himself into the fashionable Hotel Willard in Washington, D.C., where it was rumored the vice president and several senators had also established residence. He invited the
Washington Times
newspaper editor and other reporters to gather in his room at the Willard. Early guessed that if he mingled among the powerful, if he demonstrated in a very public manner just how easily one of the four hundred lepers at large could walk among healthy citizens, a national home for victims of the disease would not be far behind. It took several years of public appearances for Early’s dream to bear fruit. But in 1917, Woodrow Wilson signed legislation authorizing $250,000 for the care and treatment of people afflicted with leprosy. They would be transported free to a yet-to-be-established U.S. leprosarium. Four years later, Carville was chosen.

Before the establishment of a national leprosarium, lepers were at the mercy of local officials or, sometimes, a renegade posse of men trying to protect their families. Some who contracted the disease were segregated from the general public in jails or dilapidated homes known as pesthouses. Not unlike the bells and clappers of biblical times, yellow flags or large quarantine signs were attached to the pesthouses to warn citizens of the danger of infection. Those who weren’t forced into quarantine lived in fear of mobs that threatened their families with arson. When a family member was diagnosed with leprosy, unafflicted relatives often fled to avoid neighbors who would ostracize spouses and children. There was widespread misunderstanding. Many still believed that leprosy was a disease of the soul, that the victim had been stricken by God for misdeeds.

Early intended to secure a home for himself and others with leprosy, but it brought about an unintended consequence: a new national policy of segregation tantamount to imprisonment.

Even though the new policy of mandatory confinement came from federal law, it was enforced by local officials. Enforcement played out differently depending on the fears, biases, and misunderstandings of state and county law enforcement officials. Some individuals who contracted leprosy were brought to Carville in shackles. Others were locked in jail cells until paid couriers, sometimes armed with handguns, could be hired to transport them to the leprosarium. In some states, if multiple family members were afflicted with leprosy, their home might be torched. An infected child’s toys, clothes, and books were incinerated. Parents were forcibly removed from their children. Children were pulled from the arms of their parents.

Fear of the disease was so rampant that arrivals at Carville took on new names to protect their families from the stigma. A gentleman named Stanley Stein, who contracted the disease at age nineteen and was later confined at Carville, wrote that he felt like “an exile in his own country.”

If there were any bright spots in the early history, it was the Sisters of Charity. The nuns were dedicated to the physical and spiritual comfort of the outcasts. According to patients’ accounts, the nuns’ kindness was the saving grace of the colony. One sister who arrived at the turn of the century told the patients she would never use the term “leper” to describe them. Instead she called them “my friends.”

Over the decades the residents at the leprosarium sponsored Mardi Gras parades, launched their own publications, organized a patient federation, Boy Scout troops, a softball team, and even a Lions club. The stories amazed me—as did the history of the leprosarium. The more I learned, the more intrigued I became with this extraordinary community of people who established their own rituals and traditions.

But the disease itself was even more evocative. One of the reference books that piqued my interest was an illustrated medical atlas with more than a hundred clinical photographs. I carried it with me around the colony, but I was careful about when and where I studied it. I kept it hidden between two notebooks.

In graphic and shocking candor, the photographs depicted the
effects of leprosy at progressively severe stages. The patients at the beginning of the book, the ones identified as having the most immunity, looked relatively unscathed—patches of skin with pigmentation loss, eyebrows with no hair growth, minor abrasions. As I turned the pages and moved into the section that depicted the borderline diagnoses, I saw pustules and swollen faces, lumpy protrusions on the ears and forehead, torsos covered with red lesions. At the back of the manual, the images became more and more horrific. The patients with little or no immunity, a diagnosis called
lepromatous leprosy,
had feet so deformed and twisted I couldn’t tell if the toes had disappeared or if they had been grafted together. Noses were virtually nonexistent. Appendages were so disfigured that amputation might have been preferable. And patients suffering from a rare form of leprosy called
Lucio’s phenomenon
were left with huge holes in their flesh that looked like their skin had been eaten away to the bone by parasites. Their faces were scarred, consumed to the point of looking inhuman.

Black boxes were superimposed over their eyes to protect their identities, but Carville was home to the very last leprosy patients in North America. I assumed some of the patients here must have been featured in this book.

But the most worrisome revelation about leprosy—confirmed by Doc and the reference books—was that no one was certain how the disease was transmitted, no vaccine existed to prevent the spread, and no test was available to determine who was naturally immune and who was susceptible.